Stories: who got cfs as a teenager?

Discussion in 'Fibromyalgia Main Forum' started by jenn5, Apr 27, 2006.

  1. jenn5

    jenn5 New Member

    I know there are other younger people here. I'm 19. Just wondering what your stories are and how you got sick. Did your parents believe you? Did you finish school?

    How long have you been sick, and how will you start your life over again when you get well as an adult? Do you feel hope for your future?

    I feel like life's passing me by. I've been extremely sick for 3 years and couldn't do much since 14. It seems odd to be 'burntout' so young, How can we be so worn when we haven't even started a career or had a family? Please tell me your thoughts. Thanks!

    Jenn
  2. amymb74

    amymb74 New Member

    I had already gratuated high school, had a full time job & going to college. I had to give up everything. I am 31 now and feel like I missed my 20s altogether. Now I'm thinking my 30s are shot too. My family was supportive in the beginning but I don't think they give it a second thought now. I don't really mention it because nobody seems too interested. I don't think they realize how much I wanted in my life. I'm envious of my 56 y/o mother who just started her own business. Its an awful way to live. I hope you feel better soon, I think by you saying 'when' you get better instead of 'if' says a lot. AMY
  3. Trevor1

    Trevor1 New Member

    Hi Jenn,

    Im 18, and got sick last summer in June. So im getting close to having CFS for a year. Im going to be turning 19 next month.

    CFS has killed my social life, and academic life. I was going to a University, had to drop out because I couldn't live at the dorms, plus my major was impossible with the brain fog.

    I wen't home after spending two days at the dorms and finishing the rest of the semester at home, im currently doing online school. Its very frustrating, but the semester is almost over so im looking forward to that.

    I got sick on vacation, my senior trip with a bunch of my buddies in California. One morning just felt like I had the flu very bad, then the brain fog came, then the extreme fatigue. And I haven't been the same since.

    As far as the future goes, I struggle with each day as it is. So im not sure how im going to handle that, don't think about it all that much. My mom is really the only one that understands that im really sick, my dad thinks I just need to do yardwork and ill be good to go. And of course my friends don't understand, they bug me all the time to hangout. I make it out of the house maybe once a week.

    Everyday I feel life passing me by, its quite depressing. But im doin my best to hang in there, and im sure you are to. Youve been extremely sick for 3 years now, 2 more years of this really scares me.

    Hopefully they keep making breakthroughs with the whole genetics issue.

    Im quite a restless person because of this, I used to be so mellow and laid back. Now I snap at people because CFS gets me frustrated all the time. CFS is one horrible disease, and im glad the public awareness is starting in June. That will be good for the CFS community, maybe people will start to realize how bad it is. Like my friends, and my dad heh.

    Anyway, ive got some homework to attend to. Which is going to keep me very busy for the rest of the night.

    Take care,
    Trevor

  4. kelsnsync

    kelsnsync New Member

    Hi Jenn!
    I just signed up for this website/message board 5 minutes ago and the very first message I saw was yours! And coincidentally I am only 20 and I've had CFS for almost 4 years...although I've had Rheumatoid Arthritis since I was 14.
    I've always wondered about the other young people with CFS because sometimes I feel like I'm the only one..but I know that's not true.
    I'm still trying to figure out my case. Like everyone's it is really complicated. My structure is a big problem..which may be due to a fall I had when I was young and also due to this rough physical treatment I tried in high school, called "rolfing". My hips roll forward, causing 1 leg to be longer than the other and throwing off my whole alignment. In addition to that, I believe I've developed Candida due to my "altered" state (being out of alignment). I also just read on this website that getting a Polio vaccine when you are young may cause CFS. I think the combination of all of these things have put me in pretty bad shape.
    At first I struggled with a lot of people not believing me..including my mom at the start. I'd always had physical problems and I don't think my mom took it seriously when I said I was REALLY tired. Then I insisted that there was something wrong and told her I would take myself to the doctor if she wasn't going to.
    Anyway, my story is SUPER long..as I'm sure everyone's is (including your's) and I feel like I am just writing random thoughts since it's hard to compile everything I've been through and my thoughts on CFS into one message. But yes..I finished high school and even finished out swimming. I was a competetive swimmer for 10 years. I got CFS at the beginning of my senior year, but I pushed through high school swim season and then through my last summer swim season. And now I'm in college. I've completed 3 years and after next year I will have my Bachelor's Degree in Dietetics (a passion that spurred from my experiences with diet changes due to CFS). I guess it's been a little harder for me than for most kids, but I have survived fine and have become really strong because of it. Plus, I pretty much have a 4.0, so who says you can't succeed if you are sick?
    And yes.. I have hope for the future. I know I will be better some day. I just really pray that it is soon. This illness is incredibly difficult and draining and of course I want it to be over..but I really believe it will be! I think there is a plan for me and I think I will be better. But at the same time, I am very aware of ALL that I have learned and HOW MUCH I have grown because of this disease. I feel blessed actually to be living this unique and trying life and I know that I am very strong as a result.
    Well I was really excited when I saw your post and I want to hear your story. I've never talked to another "kid" with chronic fatigue! Please write back. Oh, and where are you from? I'm from Michigan..near Detroit.
    ~Kelsey
  5. mrstyedawg

    mrstyedawg Member

    I was 19 years old when I was diagnosed, also. I am now 41. The most frustrating thing for me was finding a doctor that would acknowledge this as a disease. Most in my family did not understand and thought it was depression or emotional problems.

    The good thing about this now is that the medical field is finally accepting this as a real disease. So hopefully it will not be as long for you as is has been for me for a treatment to be found.

    I am so sorry that you are sick at such a young age, but you are not alone. Do not give up hope. I know that this is hard sometimes, but it is the only thing that gets me through the day. How disabled are you?
    [This Message was Edited on 04/27/2006]
  6. Hope4Sofia

    Hope4Sofia New Member

    I think it started as CFS. The intense fatigue started my senior year in highschool. I would sleep every afternoon for 3 to 4 hours, get up for dinner and study, then back to bed.

    I didn't get the diag for FM until this year. It has been 15 yrs since my illness started.

    I did complete highschool and college but I was always very disciplined. I took a lot of naps. I always had trouble getting through a full work day. I used to stop my car half way home and nap in a parking lot after work. I would also nap on my breaks.

    We are all different so no one can tell you how you will manage but try to live as much as possible. The illness has been difficult but I have been able to enjoy a lot of my life dispite it.

    Hugs

    Sofi
  7. goaska29

    goaska29 New Member

    I noticed my first symptoms at 19, when I was a sophomore in college. Luckily, after a few months, I started to get better. But those few months were awful...I have to take a leave of absense from school..it was miserable.

    Then, about 5 years later it hit me full-blown. I was incredibly active in the interim. I had to quit grad school, my job, and my social life. I am very grateful to have had that first half of my 20's, but I'm disheartened to finish them off like this....although I'm only 26 now.

    There aren't too many success stories out there for CFS, but I still try and keep the hope alive.

    -GoAskAlice
  8. patches25

    patches25 New Member

    My daughter got very ill at age 13 and yes I believed her. She was very much in pain. Had difficulties eating, couldn't walk very far and even for a while was unable to ever raise herself from sitting to a standing position.

    She did get some better, completed schooling and even went to college and completed graduate work. She has a very strong will. There were periods of time when we had to have the HS teachers come to our home to proctor her during her worst of weeks.

    No she is not recovered but she is not as ill as she was during her HS years. She had a very hard life and never really had much of years of fun. She had so many therapies, and doctor appts, rather than dances and dates.

    I got this disease when 20 years old so nearly a teen. I already had my bachelors degree and was out teaching but I lost a lot of work time being ill so much. After 2 years I had to take a year off and try to recover, didn't get much better, returned for another year and then called it quits permanently. Medical community was no help. That was back in the 1960s. I was diagnosed with stress and asked if husband "satisfied" me. Women were treated so badly. At times I wonder why 45 years hasn't changed in the medical community. Bah humbug to them. E.
  9. jenn5

    jenn5 New Member

    thanks for the replies everybody. Anyone else?

    I am pretty disabled, I mostly only leave the house to go to the doctor. I work with a chiropractor and have made extremely slow progress- I have seen him for a year and a half. He treats me mainly with wholefood supplements. I am able to cook a little now, in addition to tv, computer and reading. Thank you for your concern.[This Message was Edited on 04/28/2006]
  10. richa3csi

    richa3csi New Member

    Hi..I got diagnosed when i was 16, I have had alot of other medical problems before it so high school was a rough time for me. When i went to college I had a really hard time because I didnt fit in with anyone plus my pain changed on a daily basis and i fell into depression. I want to finish school but everytime i try and go back something happens and i dont do it. I am only 22 now and im doing a pharmacy tech program from home- so i can get a somewhat decent job and see what to do from there. Good luck ..if u need to talk ..

    Richa3csi
  11. KMD90603

    KMD90603 New Member

    It's hard to be sick so young. I'm 24 years old, and I was diagnosed with CFIDS when I was 22. However, I believe my disease dates back to when I had mono at the age of 15. I can remember being a carefree teenager before getting sick. I was just like any other young person...I had energy, I wanted to be out with my friends all the time, and I was excited about life. After getting sick with mono, things completely changed. On several occasions, I would make comments to my parents about feeling like I didn't fully recover. But, somehow I thought it was normal to never feel the same after having mono.

    I had my son when I was 19, and that seemed to make things worse. I was constantly sick and missing work. I went through 2 years of this nightmare before finally going to the doctor and demanding answers. He sent me to a rheumy who said fibro. However, pain was not and still is not a major issue for me. I get muscle aches and joint pain secondary to my fevers, but that's the extent of it. So, after running a low-grade fever for a month straight, my doctor finally sent me to an infectious disease doctor who officially diagnosed me with CFIDS.

    To answer some of your questions: My parents believed me from the start. They were worried about what could be wrong when I first began with the diagnosing process. But, they were very supportive and never questioned it. My mother will read research articles I send her about CFIDS, and she is really helpful when she knows I'm having a rough time.

    As far as finishing school, thankfully I made it through high school. I'm currently in nursing school and will graduate in may of 2007. For me, it wasn't a question of whether I'd pursue my career goals or not. In my mind, this disease is just another obstacle that I have to fight through. I can either take it lying down and let it get the best of me, or I can still try to make the best of my life despite my illness. I will be the first to admit how difficult it can be. I have good days and bad days, however, I'm in a big flare right now so I've had many bad days over the past month. But, it still won't stop me. Right now, I'm just allowing myself the extra rest and accepting alot of help from others.

    I feel alot of hope for the future. Especially in light of the CDC's recently published research, I feel like the medical world is coming a long way in the fight against CFIDS. I think physicians and just the world in general is finally coming around and viewing this as a disease just like any other. No, it won't kill us, but it can be extremely debilitating. I hope that the CDC and other groups continue with their research, and can eventually find a proven treatment that will help to manage our illness.

    I hope this helps a bit. I didn't mean for it to get so long, but just remember there is hope. Some people are extremely sick with the disease, while others have milder forms. Find what treatments, medical and non-medical, work for you and go with the flow.

    Gentle healing hugs,
    Kim
  12. Shannonsparkles

    Shannonsparkles New Member

    ... the fatigue started. Then I got mono in grade 8, and was never well again. I was bedridden for a couple of months, then able to return to school, off and on. I had a hard time finishing high school. After graduating, I was too sick to work. Then I became bedridden.

    My symptoms change a bit, but I remain disabled. I've heard of some people having it for years or decades and then suddenly getting a remission. I don't know about me. So I just try to do something I like every day, like comming here, or watching TV on days that I'm up to it. I can't work or leave the house or go for a walk anymore.
  13. jenn5

    jenn5 New Member